“Believe it can be done. When you believe something can be done, really believe, your mind will find the ways to do it. Believing a solution paves the way to solution.”
― David J. Schwartz
Our Mission
To bring a face and voice to SIOD and help fund the research needed to prolong these childrens’ lives.
The Little Giants Foundation works with families, doctors and researchers around the world to help educate, raise awareness, and gather funding for a rare genetic life-limiting disease called Schimke Immuno-osseous Dysplasia or SIOD.
Our inspiration
Emily is one of ten diagnosed in the United States and one of 50 in the world with SIOD. She is proportionate and stands 41 inches tall at 21 years of age, already surpassing the life-expectancy of this disease. She’s witty, she likes to play harmless pranks especially at school - mostly on the teachers - she loves Cheetahs and helps raise money for the cheetah conservation fund in Namibia Africa. She loves animals, fairies and all things nature and the color pink and rainbows. She’ll tell you like it is and has the heart of an old soul. Emily’s family takes each moment they get and live life to its fullest as they continually raise the bar for Emily's quality of life.
Our fight
Schimke immuno-osseous dysplasia is a condition characterized by short stature, kidney disease, and a weakened immune system. It’s believed that many more children may have Schimke but the journey to a diagnosis can take years and most lose their battle from the symptoms of kidney failure, infection, or stroke before they’ve been accurately diagnosed. Research has been going on for Emily’s disease for well over a decade and this is the hope, the belief, the one thing the Koesters have been fighting for - a possibility to prolong Emily’s life, to begin to get not only an understanding of this disease, but to help others now and in the future learn about SIOD from Emily.
“In addition to determining the length of telomeres in the blood cells of SIOD patients, the Lewis lab is determining if two important factors in maintaining telomere length – the enzyme telomerase and hexanucleotide telomere RNA - are reduced in SIOD patients.” – Dr. David Lewis
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